Day 1

I would love to say that today went better than expected... and in many ways it didn't. But of course someone out there had to continue throwing a few surprises at me...

Took forever getting myself ready again this morning. But I looked forward to having my stitches out from the PAC so as to take a proper shower again. The (new) nurse showed up 45 minutes late and just in time to fit in with the rest of my busy schedule. I had taken my antinausea medication in the morning and, more importantly, my relaxation medication (Xanax) as well which I hoped would chill me out for both the stitches and the chemo. It certainly didn't do a great job for the stitches. She gave me the injection, in my thigh, first and quite quickly. Then got to work on the stitches. It was one long big stitch and she had to do a bit of tugging and yanking to get the damn thing out which was not enjoyable but not entirely her fault.

Once the stitches were out I was able to slap on the aesthesia path (Emla Patch) and have a quick lunch and off we went. Desney accompanied me today.

We got to the clinic on time and everyone in the chemotherapy department was really very pleasant. We were let in to the chemo room together. It actually looks like a "cave" (French basement jazz club) but with much brighter lighting. The room is a semi-circle with the "bar" in the middle where the nurses are and with wonderfully comfortable reclining chairs against the round walls.

They set me down in one of the chairs and a nurse (Barbara) came to explain everything and get started. This is when the surprises started. She went over my particular internal chemotherapy as regards what chemicals they'd be using, when and what the effects (positive and negative) were of each. First surprise was that this part of the treatment takes 3 hours each day as they run dilution fluid through me for an hour, antinausea medication for about a half an hour, the actual chemo chemical for another half hour and another dilution fluid for an hour. She explained the possible side effects of this particular chemical (fatigue, risk of kidney problems - need to drink 3 litres of water a day to avoid this, fatigue, nausea - treated by the various medications, constipation - also treated with medication, etc.). She then hit me with the second surprise. I knew I was having two different chemo treatments but I had been led to understand that they were going to be a sort of "cocktail mix" and administered during the chemo treatment at the clinic. My second chemo treatment is administered by a pump which remains attached to me, via the PAC, for 24 hours. They attach the pump to the inside of my shirt with a safety pin and they change the pump each day. I therefore have to spend all day with this big plastic pump (about 10 cm) clanging about my chest. It slowly administers the chemo product over 22 to 24 hours. There goes my dream of a proper shower. On the fourth day they remove the pump. From what I can see there is one positive aspect in that because the pump remains connected to the catheter it looks like they don't have to inject me every day and just replace the pump with the chemo connection.

She explained some of the side effects of this second chemical (fatigue again, anaemia - basically more fatigue, reduced white blood cells - risk of infection, ...). She told us about what to look out for (mouth sores, fever, ...) which should be told to a doctor when it happens. She also told us a lot of about the "real" effects of the radiation therapy in combination with chemo as they see it often. Her explanation basically went along with what we'd already heard and confirmed most of the bad news (burning on the skin outside the neck, difficulty to swallow requiring non-solid foods, less saliva and less taste). However she also appeared to believe that all of those symptoms would go away with time.

She was more helpful and provided more detailed and gentle explanation than all of the doctors we've met up to now.

Although Desney stayed with me the whole time, sitting in a much more uncomfortable chair reading her book and doing her puzzles, I kicked back with my iPod and my headphones and felt like I was on another planet. Thank God, or whoever as he and I are not communicating at the moment, for the iPod as it truly made it a more than bearable and every so enjoyable experience. With the relaxing music in both ears and my eyes closed I was in a different reality. I would only realise where I was when I would open my eyes to go to the toilet, accompanying my "date" (perf machine), every 45 minutes or so.

Once it was all over, and another nurse had strapped the pump on me, we took a taxi home where I truly started feeling exhausted.

So far so good. One day down and 55 to go... and then just getting this stuff out of my system...

Last chance for company

Busy day... the kids got off to school, Desney off to a school meeting (which I normally would have attended) and I went to the market to do a small part of the fresh food shopping. Just the buthcher and the Italian market...

My nurse showed up a bit early and we got through another injection as usual.

In the afternoon I took Alexandra to La Défense to get some new shoes for her to wear in the grueling mud of camp in England. It was a great feeling to drive again. I almost felt human. The best part of the experience was actually feeling a bit more "in control" again. Yet another day without having to go to the Clinic and a day in which anything I did was because I wanted to and knew what I was doing. This is very different than so many of my days where I don't know what's going to happen to me or who is going to do what to me... whether I want them to or not.

We got Alex a very cool pair of sneakers (Rip Curl). While we were there I also picked up a couple of relaxation CDs, from Nature et Découvertes, which I will add to my iPod Shuffle to listen to during chemotherapy. It's amazing how relaxed one becomes just walking in to this store...

When we got home Jessica was on the phone with one of her friends, as usual, and we casually heard that her father was in town. Her father lives in Italy and we never know when he's going to be in Paris. We immediately invited the two of them over for dinner taking advantage of the rare occurence to have him around as well as probably one of the last times I'm going to want company over for a while... they accepted.

Dinner was nothing special. Just something Desney whipped up for a regular Saturday night. I threw a bottle of Champagne in to the freezer as soon as they had accepted our invitation. We had the Champagne (Pol Roger) with apéritif. Unfortunately the Champagne tasted horrible to me (again). But I enjoyed the crisps, olives, pretzels and such which I hadn't had for a while. Desney came up with a shrimp and avocado salad starter which was very nice which we had with a wonderful Morgon '99 from the Trichards. Again the wine tasted awful to me. But I know from the bouquet that it was quite good. Dessert was a Charlotte au poire which Desney had quickly bought in the afternoon and we had a sweet white from the Loire Valley (Château de Breuil). The wine smelled absolutely wonderful and everyone (else) seemed to enjoy it quite a lot. It was just such a great feeling to have friends over and have a good meal. Another simple pleasure of life...

A normal Friday

Today was the first day in quite some time when I didn't have to go back to the clinic.

I still had to get my midday injection of course. But I'm almost getting used to that. The nurse is so nice that I get over the pain relatively quickly. Was in the right side of the stomach today.

After lunch I headed off to the FNAC to do some shopping. I knew I needed to replace my iPod as my current one only lasts for about 45 minutes. The iPod is going to be absolutely vital to me during chemotherapy. After having spoken to a friend of ours who has been through it she highly recommends having something to listen to, read, play with, etc. so as to keep your mind off of it. I couldn't agree more. As the chemotherapy injection lasts about 2 hours or more I need a working iPod. I would have loved to just buckled down and bought the new iPod video but it's so new it's not available here yet. I didn't want to spend a fortune on a different iPod as I know I'll be getting the iPod Video probably as soon as it's available. But I also had these FNAC gift certificates, which my parents' association (APESA) had given me, burning a hole in my pocket. I bought the iPod Shuffle and some other stuff and headed home.

Believe it or not I also had lunch at McDonalds. Now many of you, including myself, may ask "Why would you possibly eat at McDonalds in Paris (France) of all places?" I can only answer... "Because I can". This was probably my last hamburger for quite some time to come and I wanted to enjoy the experience while I could. Rest assured I am continuing to eat wonderful French food every day in preparation for those days when I can no longer get the solids down. But this was just something I had to do. Of course it is interesting, and ever so slightly depressing, that I could taste this junk food without any difficulty while I can not taste wonderful meals (steak, wine, pork, ...). Apparently articial chemicals are easier to taste than natural foods and flavours. I felt only ever so slighly embarassed. However if there was a good New York Deli in the neighbourhood I certainly would have gone there instead!

Once I got home I of course charged up the iPod Shuffle and played with it for a while. I started making playlists to use during chemo...

In the evening we had Pizza Hut and watched Finding Neverland. I gotta say... I still haven't seen a bad Johnny Depp movie!

A real mixup which turned out well...

Tonight was my final clinical examination before starting treatment on Monday.

To summarise: Last Thursday I met Dr. Kanoui for the first time. Up until our meeting each doctor had said to me that I would definitely have to have x-ray therapy but that I would most likely not need chemotherapy. I knew that x-ray therapy was going to be tough. But I was able to console myself with the constant phrase "at least it's not chemo". During our meeting with Dr. Kanoui he explained that I needed to have chemotherapy and x-ray therapy together. He answered a certain number of our questions, reluctantly, and made the appointments for the x-ray therapy preparations. I therefore had an appointment on Tuesday for the x-ray therapy mask fitting, on Wednesday for the x-ray therapy simulation and on Thursday for a clinical exam with him. He called me the following day (Friday) to confirm that the group of doctors agreed, including Dr. Hagege, that chemotherapy was necessary. After I confirmed it with my doctor (Dr. Girard), who suddenly agreed with the oncologists, I agreed. Dr. Kanoui therefore set up the appointment for the operation implanting the "PAC" in my chest to facilitate the chemotherapy. We said we would talk about the rest at our exam on Thursday.

I went through Monday, Tuesday and Wednesday like a good patient. I confirmed with his assistant, who I saw on both Tuesday and Wednesday, my remaining appointments including tonight's clinical exam.

All of this to say: Desney and I arrived on time for my appointment. We were told that my appointment was to start treatment immediately and that Dr. Kanoui was not there. His assistant was not there either. However I had an appointment to start x-ray therapy. I told them that I was not starting treatment until after discussion with Dr. Kanoui and although they had apparently prepared me physically I was not yet prepared psychologically as I had questions which needed answering. After much discussion back and forth they agreed to let me see a different oncologist and to cancel this evening's treatment appointment.

We sat down in the waiting room and I was very upset. I couldn't understand how they could possible have done this to me. How they could possibly have imagined that I would start treatment like this. I asked when I would be scheduled to see Dr. Kanoui again. I was told it would be next Wednesday. That would be my third day of chemotherapy. I was therefore expected to start chemotherapy with no preparation whatsoever and no prescription for the necessary medication.

After a long wait we were ushered in to meet Dr. Mammar. What a shock. He was wonderful! He sat down and gently, calmly and kindly answered all of our questions including some we hadn't even asked yet as we expected we would have been told. We learned quite a lot. It was a true pleasure to talk with him. It turns out he's from Burgundy which we found out during the wine discussion which came in the middle of everything else...

Dr. Mammar first explained about the effects of x-ray therapy both in the short-term, long-term and forever. He is the first doctor to explain that this therapy is going to have a couple of permanent effects on me. At the minimum my neck is going to be harder and I will no longer be able to turn my head past my shoulder. It will have slightly less freedom of movement than before. It will not be debilitating but slightly limiting and it will be permanent. The x-ray therapy is going to severely affect my salivary glands. During the treatment I am going to have great difficulty swallowing and it is most likely that there will be a period during which I will not be able to eat solids. The permanent effect however is that I will have less saliva, and a dry mouth, for the rest of my life. It was at this point that I asked him about whether any of this will have any affect on my ability to taste. He started answering "well if you were a wine master..." and Desney and I both jumped in... "as a matter of fact... I am". We had a discussion about my interest in wine and how important this was to me. He too is a wine "amateur", especially growing up in Burgundy, and knows how important it can be. Unfortunately they do not have any information, yet, as regards the effects on fine-tasting capacities after the treatment. However I shouldn't count on tasting wine properly for at least a year. This was quite a blow. I have said most of my life that if there was ever a time a doctor said to me "you will live... but you'll have to stop drinking wine" I would reply "I'd rather die". I am now put before reality and am having to make another very sad choice. I'm going to have to live without wine for quite some time and just dream that my tasting capacities come back with time...

He explained the immediate effects of the x-ray therapy and he showed us pictures of what areas of my neck, chest and jaw are going to be treated. The treatment is going to be very "toxic", aggressive and quite painful. The chemotherapy is actually going to increase the negative aspects of the x-ray therapy effects. Most of that I knew already... and I also knew there wasn't anything I could do about it. The pain I'm going to have to learn to live with and get through. Easy to say at the moment...

We talked about the chemotherapy itself and he explained how it works. They'll inject it directly in to my "PAC" and I'll sit around for 2 hours while it is slowly injected through my body. I told him how worried I was about the nausea and vomiting and how sensitive my stomach is to stress and worry. I gave him a brief history of how when I get upset my stomach is the first part of my body to get upset. After a bit of discussion he prescribed the anti-nausea drugs and after explaining that I'm nauseous even before the operations/procedures start he prescribed another anti-nausea drug I can take beforehand. This is exactly what I needed. I felt very reassured.

He was also kind enough, eventually, to prescribe the patches often used on children to slightly anesthetise the skin prior to injections.

We had a bit of a talk about the dental situation and he was the first to explain that I will have to use a "goutière" (a mold which fits my teeth and which distributes extra fluoride) in my mouth for about 3 minutes a day FOR THE REST OF MY LIFE. The x-ray therapy is going to weaken my teeth and it mustn't create any infection which could touch the bones themselves...

As this meeting was such a radical change from our experiences with Dr. Kanoui I outright asked him if I could change oncologists and get him to follow me instead. This was obviously politically incorrect and he sidestepped the question. However I will be able to see him again and I will make sure I do so on the days he is at the clinic.

After all of this I agreed to a final session of pre-x-ray therapy verification where they take x-rays of me in the various positions they will use on the days of treatment. It took about 10-15 minutes and everyone was happy afterwards.

I felt much more reassured when I left and even a bit prepared to start the treatment on Monday. We went to the two departments (x-ray therapy and chemotherapy) and got my first appointment dates and times.

Got home late...

Now I have 3 days where the "only" treatment I have is my daily injection and I do not have to go back to the clinic until after the weekend!

Marked

The nurse came on time and Alexandra got to meet her today. A jab in the thigh this time and away she went.

Back to the clinic this afternoon for my x-ray therapy simulation. I was under the impression this was just going to be taking a few more measures and aiming the lights as though they were x-rays. But of course... it had to be a bit more complicated.

They lie me down on the bed which goes in to the scanner and they strap my mask on my face and connect it to the bed. I am therefore pinned to the bed. I am then told to not move and that the measuresements are as precise as 1 millimetre. I am then, kindly, told that it will "only" last THIRTY MINUTES. Thirty minutes of not moving one millimetre. I was sweating buckets. It's amazing how much physical work it is to not move. Then of course the mind desperately wants to move. Not because it needs to. But just because someone told me not to. It's like when you look over a really high ledge and there's a tiny little part of you that wants to jump. There was this reasonably big part of me that wanted to shake and nod my head up and down and back and forth. But I didn't.

As he took measures he would come back in and draw on my mask with a smelly marker. I couldn't see what he was doing as my eyes were closed under the mask. Then he started drawing on my chest. He would draw some sort of symbol and then cover it up with a plastic transpared sort of plaster. That was OK. I was prepared for that. Of course he said he was "almost finished" long before he was actually finished. Finally he comes at me and says now I am going to tatoo you and it will sting. I looked up and said "are you kidding?". He said no and that it was no big deal. I haven't quite figured out yet why cutting me up and picking me with needles is always such a minor aspect to the nurses and doctors that they don't even think it needs mentioning let alone compassion. He then proceeded to tatoo a black cross right in the middle of my chest. Not fun.

I was finally allowed to go and went home to lie down...

I had always said I would never ever get a tatoo. I always thought "pay someone to hurt me with tiny needles and inject ink in to my body with an image that will remain permanently in my skin? ... no thanks"

Now I am the not so proud owner of a cross tatoo in the middle of my chest. The Catholic side of my family is going to be so proud. I, on the other hand, would have gladly abstained.

Sometimes things are actually easier than they're supposed to be

I was able to get some work done this morning which felt good.

My new nurse showed up at 11:40 to give me an injection in my stomach. She's very nice, kind and gentle and not bad looking which makes the experience more enjoyable. However it definitely hurt more today than yesterday. Seeing as though I hadn't had the pre-anesthesia they gave me before the operation as well as the side effects from the local anesthesia helping me out it's quite obvious as to why it wasn't the same. Duh. I lied down for about a half an hour and got over it.

Back to the clinic this afternoon for a scanner and mask fitting. I wasn't sure how they were going to hurt me this time. But I was sure they were going to somehow. The scanner assistant was very nice. I had to lie down, as usual, and they put this sort of cold, wet plastic mask over me and taped it down on the sides and attached it to the scanner bench. They then made a hole for me to breathe through (mouth and nose). They put me in to position and told me not to move until it was over. Not moving for 10 minutes while the scanner buzzed round and round my head was not easy. But as my eyes were closed, as usual, I practically fell asleep.

I finally felt the bench rise up and the assistant said it was over. I expected her to have to give me some sort of antibiotic or antisomething injection before I left. She said I could go. I didn't need to be told that twice. I got out, calmly but quickly, and found myself out on the street feeling quite qood.

I took the bus back home and relaxed for the rest of the afternoon in amazement that it was actually possible to go to that clinic without them hurting me. I know I will no longer feel that way as of next week but it was definitely reassuring...

Things are just never as easy as they're supposed to be

I actually got a bit of work done this morning which was a good feeling.

Then I went back to the clinic for them to put this thing in my body.

I got up to the 4th floor and suddenly realised I was in for real surgery. I know the drill. The shower with the disinfectant stuff (betadine), the medical gown that never closes properly and gives everyone a constant look at my ass, the funny paper shower cap, the warm socks with the paper shoes. I knew what that meant and I wasn't pleased. Dr. Kanoui had sold this to me as such a minor thing. In it goes and that's it.

They gave me a blue pill which was supposed to calm me down. It takes a lot more than one pill to calm down a nervous, frightened and upset New Yorker!

They took me up to the operating room in a wheelchair and then up on the table. I knew it was going to be local anesthesia but I was really hoping I wasn't going to get any injections. Of course I hadn't thought it through. Of course there is no other logical way of getting the anesthesia in to the area. But logic had no role in my thoughts at the time. I just wanted one procedure, finally, to be easy and painless. This wasn't. This was probably the first time that one of the procedures was actually worse than I had imagined. That's saying something because I have some pretty vivid and imaginative nightmares lately.

They shot me up with the anesthesia, which I definitely felt, and then they covered me up so I could just look at the wall. The doctor kept asking "How are you doing?". How the hell am I supposed to answer that question? I'm lying there, wide awake, with my chest open and in much more pain that I thought I would be. What am I going to say? "Yeah, I'm fine. Having the time of my life. Put on some music and I'll dance..." I just kept lying "Ca va" (OK).

About 20 minutes in to the operation he started saying "presque fini" (almost finished) which brought a bit of hope to my day. It wasn't until 20 minutes later, when he was closing up, that I realised that this guy had an entirely different definition of "almost finished" than I did. Then when he was sewing up he said "quasiment fini" (completely finished) and I was ready to jump up and get the hell out of there. He then proceeded to continue with at least 3 more stitches as well as putting on the bandages.

Finally they let me sit up. All at once I wished I hadn't. I had already sweat a few buckets and now I started shivering. They wrapped me up, put me in the wheelchair and sent me back to the pre-op / post-op rooms. Here I learned that the roller coaster ride was not quite over yet. They let me sit for a while and relax with my legs up. Then the nurse gave me my prescriptions. This was fine by me. Medication generally includes something to relieve the pain so I was pleased ot get my prescriptions. Then she starts explaining the prescription to me.

This first item is the tablet I'm going to give you right now. You don't need to take those any more. This next item is an injection you'll need to have once a day, every day, for the next seven days IN YOUR STOMACH. I looked at her and literally said "Are you kidding?!?!?!". She came back in about 10 minutes and gave me my first injection which covered me for the day. Believe it or not I did not actually thank her.

I got dressed, very slowly, and made my way downstairs. In the condition I was in they wouldn't let me go home alone. I didn't mind but they really could have let us know beforehand that I would need to be accompanied so we could have organised ourselves better. I called Desney on the phone and even though she had a very important deadline for 5 o'clock she was there in front of the clinic in 20 mintes. We got a cab home and I immediately took a painkiller (paracetamol and codeine).

Basically it feels like I've been shot. But it also feels like they forgot to take out the bullet. It's very strange having this weight inside my chest just above my right breast. I'm going to have to get used to it as it'll be there for another 2 months when I get to re-experience today's adventure in reverse (surgical removal of the device).

In the mean time I get to take off the bandages tomorrow morning and a nurse will come and give ma jab every day and then she'll take out the stitches next Monday.

Now I've got pain on both sides of my body and I no longer trust any member of the medical profession. Tomorrow is supposed to be a simple scanner, without injection, and painless.

Yeah... right.

A more than slight disappointment

After my very positive experience with the beer on Friday night I was looking forward to a bottle of wine.

Desney made a wonderful lamb stew and I broke open a really nice bottle of Henri Delagrange Volnay Premier Cru Clos des Chênes 1998. It was a bit young, definitely pink edges, but it looked good.

I poured myself a glass and almost immediately realised my problem. with the surgery and the medication or whatever my taste buds have been screwed. The wine tasted so bad I actually couldn't finished my glass. Desney and Jessica were able to appreciate the wine for the rest of the meal and I just watched with jealousy...

I was hoping that I had one week of reprieve where I could drink wine. I was planning on having a bottle of wine each night, with dinner, for the rest of the week until treatment started.

The week is now going to seem even longer...

Then again I think of how much I am going to appreciate a good glass of wine when my taste buds come back.

The next step

Dr. Kanoui called. He has started the ball rolling and made the necessary appointments. He tends to talk to me like I know everything that's supposed to happen and like I know what he's talking about. Now is one of those times I wish I spent more attention to the teachers in biology classes rather than spending so much time with my head in the clouds.

He explained that they're going to insert a catheter under my skin under my clavicle. They'll be doing this under local anesthesia. This catheter will allow them to inject the chemo product every day without having to stick a needle in me daily. I suppose I should be grateful. However I wasn't really ready for this as I had not idea how all of this works. Then again... why should I.

He's scheduled the pose de l'appareil (installation of the mechanism) for Monday at 13:30. That's a bit sooner then I was psychologically ready for. But it gets it over with.

It's going to be a busy week for me and I"m going to get to know the clinic real well. Monday I've got this intervention under local anesthesia. Personally I would prefer they just knock me out completely but no one asked my opinion... as usual. Tuesday I go for a scanner, this time without injection, for them to start positioning this mask they use for the x-ray therapy. Wednesday I go back for them to simulate the x-ray therapy using the mask they will have made from the scan. Thursday I go for the clinical exam with Dr. Kanoui where we hopefully will get to ask him questions again. Desney will be coming with me to this exam.

Dr. Kanoui has confirmed that I'll be starting both chemotherapy and x-ray therapy on Monday (17/10). It's going to be a long week of waiting and anticipating...

Anne Roumanoff

We got the tickets quite some time ago. Anne Roumanoff coming to Asnières was just not something I could miss.

Anne Roumanoff is a stand-up comedian who Desney and I have watched for over 10 years now. Jessica's been watching her for the last couple of years on TV and she now has a TV program where she presents other stand-up comedians.

Jessica and I went for a quick dinner beforehand at the Japanese restaurant just across the street. Jessica loves Sushi. I don't know where she gets it from. We had a couple of huge plates of Sushi and Sashimi and I dared to order a beer. I had my first gulp with the expectation of a burning feeling down my entire throat and ready to ask for tea. To my great surprise it felt and tasted wonderful. So good in fact that I had another before the end of the meal. Sushi and a couple of cold Japanese beers (Kirin) another one of the simple pleasures of life. We spoke a bit about my medical news. She kept saying to look on the positive aspects (could be worse, there are people worse off elsewhere, best medical care in the world, still young, yadda yadda yadda). Sheer optimism... it's amazing how certain genes can jump a generation (Noni). We left just in time to make it to the performance. After getting back my credit card receipt I realised that dinner cost more than the show!

The show was great. It was basically a Best of Anne Roumanoff. She performed all of her classic sketches from the past 10 years or so. However she had modernised each one a bit and threw in a bit of improvisation and current information in each. It was a lot of fun and it felt great to laugh. It's generally impossible to translate jokes from one language to another... but... she had a few which I think might work:

---

You know why the Americans were so sure there were weapons of mass destruction in Iraq?

They had saved the invoices.

---

Millions of French are willing to spend 0.50 € to vote for which member of Star Academy (TV reality show) they want to vote off. But only 20% of them will go and vote, for free, for their politicians.

We should have a President Academy. You vote by SMS (textos) and we eliminate one member of the cabinet / parliament / assembly per week.

---

After the show I played tourist and got her to autograph her book which I proudly brought home. Jessica and I walked home and repeated jokes in the street. She remembered just as many as I did. It was great fun.

It just gets worse

Dr. Kanoui just called. He met with 4 other oncologists this morning and he talked with Dr. Hagege and all of them agreed that I need chemotherapy in addition to the x-ray therapy.

He explained to me a bit about how it would work. There would be 3 or 4 series of chemotherapy during the 8 weeks of x-ray therapy. 3 days of x-ray and chemotherapy together and then 18 days of x-ray therapy only and then 3 days of both, etc.

I asked him about the side effects and he explained that the chemo will accentuate the negative effects of the x-ray therapy so I will be more tired, I will have more difficulty swallowing and eating, I will have more burning sensations internally and externally. I asked him about the classic side effects of chemo and he said they have much better medication to treat the nausea and that hair loss is not systematic.

This would involve much more preparation and more appointments at the clinic. He wants to start everything as quickly as possible. He said I still have the option to refuse. But he needs an answer quickly. I asked him if I could call him back and he said "of course".

I called Desney who was most supportive and wants me to do whatever is necessary. I called Dr. Girard who thinks that it is logical that I go through chemo especially taking in to consideration the number of cancerous tumours that they found. He explained a bit more to me about how the cancer cells can spread and how they can be too small to show up on a scanner today but 3 to 9 months later be full-blown tumours. The chemotherapy will eliminate those before they grow in to something which would bring the cancer back.

After a big deep breath, and a mild panic, I called Dr. Kanoui back and told him I agreed to the chemotherapy.

I will go through it. I am not at all happy. I am angry, scared and sad all at the same time. But I will go through it.

I will be very, very upset if the cancer comes back after all of this.

It's going to be a very, very long 2 months.

:-(

The meeting I had been dreading...

This was the meeting I had been dreading ever since I found out I had cancer.

Desney and I met with Dr. Kanoui, the radio-therapist, to start planning the x-ray (radiation) therapy. He was running late and the radiotherapy waiting room was absolutely packed (standing room only) with patients. The waiting room was for both patients receiving treatment and for consultations so I don't know who was waiting for who.

Dr. Kanoui asked me quite a few questions and kept speaking the answers in to a dictophone to build up my file. I gave him copies of just about every piece of paper I have received throughout treatment and gave him the whole history.

Unfortunately, right of the bat, he said the bad word. He feels that because the cancer spread throughout my throat so quickly and widely, and due to the number of cancerous tumours found, I should also have chemotherapy. This was very, very bad news for me as up to now every doctor has said I would only need x-ray therapy which is bad enough. I really, really, really do not want to have to go through chemotherapy. He said that he does not make the decision on his own. There is a conseil multidisciplinaire (a group of several cancer specialist doctors). They meet and they look over the file together and they make a group decision as to whether or not chemotherapy is necessary. He will give me the answer next Thursday. To chemo or not to chemo that is the question. It's going to be a very, very long week.

In the mean time he strongly feels we need to start the x-ray therapy as quickly as possible. I will be back to the clinic on Tuesday, Wednesday and Thursday. Tuesday they do a simple scan (no injection) to create a sort of mask they put on me during the treatment which allows the computer to pinpoint the x-rays to the right place. After the scan they actually make the mask and they try it out on me (simulation) on Wednesday. On Thursday I go back for my clinical examination with Dr. Kanoui and we start planning the actual treatment. In my opinion it will probably start the following Monday.

We spoke about the treatment. He repeated, thus confirming, a few things I already knew. Once a day; Monday through Friday; lasts eight weeks; the x-rays are only a couple of minutes (used to be about 10 minutes from the last reports I had read), ... He also gave me a bit of information as regards the effects which is what I needed to hear. As he explained it's like having a sunburn inside your throat. I'll have difficulty swallowing which I'm already sort of used to but wasn't planning on living with for another 8 weeks. I'll have a dry mouth and throat as the salivary glands are affected. I'll need to have a daily fluoride treatment as the teethe are weakened by the x-rays. I'll be eating soups, purées, compotes and other such mushy food for 8 weeks or more as I will not recuperate immediately afterwards. If my swallowing becomes too difficult they have liquid protein that they will give me to keep up my stamina. All of this is obviously not joyous information but pretty much what I expected and I knew I was going to have to go through this. But this ain't chemotherapy!

Desney didn't like him at all. She didn't like his attitude or the way that he works. I am actualyl quite accustomed to a lot of his habits and that didn't bother me much. The aspect that I disliked was one sensed immediately that he deals with hundreds of cancer cases and patients regularly and this was another one to get through. It was a very rushed meeting and I actually got the feeling we were asking too many questions at the end. This was the opposite of what I was hoping for which was a relaxed discussion to prepare us for the next phase of therapy especially taking in to consideration his announcement of the possibility of chemotherapy.

Although I have a better idea where I am headed I was not pleased when we left. I am basically pissed off at the world again and, unfortunately, taking it out on everyone around me.

I'm hiding down in my office now to spare the rest of the family my moods...

It's going to be a really long week...

Another scanner

Back to the Clinique Hartmann. This time for a scan of my thorax and abdomen to make sure the cancer has not spread downwards.

The injection didn't tickle but the procedure was not a problem. Yet another big tunnel that spins round me. I kept my eyes closed again so don't ask me how impressive it was.

This time I actually got to speak to a doctor. He was very re-assuring in that there was no indication of any cancer in any of my other organs. He was quite nice and he even told me about Erb Duchenne Paralysis to inform me that there's an illness named after me.

I came back home and slept for a while before going back out to meet the new doctor.

Another clinic

Didn't get up till late and I admit I was very slow in getting ready this morning...

By the time I was "up and running" it was just about lunch time.

After lunch I head off on my big adventure. Today is yet another national strike. Luckily, for the first time ever, they've agreed to some sort of minimal service on public transport.

I took the bus to Porte de Champerret and walked to the Clinique Hartmann in Neuilly. It was a good 25 minute walk from the bus stop. I'm starting to wonder how feasible this is going to be with my daily radiation therapy treatments.

No big deal today. Just a panoramic dental x-ray to make sure there wasn't any sort of infection or malformation in my teeth and jaw as that whole area is going to get weakened by the x-ray treatment and they can't risk infection. I looked at the x-ray afterwards and it looked fine to me. But what the hell do I know?

The clinic looked good and modern and definitely specialises in cancer treatment. they have all sorts of facilities for all sorts of different cancer treatment from scanners and surgeries up through x-ray therapy and chemotherapy.

My next visit will be Thursday for a scanner at 12:45 and then the big meeting with the oncologist / radiotherapist at 18:00 when I should finally found out when I will start treatment and what it's going to be like.

Walked back to the bus stop and got home in time to read some e-mails before falling asleep before dinner.

Just before going in to the clinic I got through to my surgeon (Dr. Hagege) to confirm that I can eat normally now. He said "not quite". He would prefer that I continue eating mushy until the end of the week as it would be "stupid" to risk an accident, whereby my inner wounds would open and I'd have to go back in to surgery which would delay all of the rest of the treatment process, just for a couple of more days. He said I could eat somewhat normally as long as I chew really, really well and avoid such things as crisps, crackers, nuts, bread crust, ...

It's at least a step in the right direction. I had salads for dinner with the rest of the family and at least felt like I was part of society again...

A better Monday

I normally hate Mondays. But this was actually not that bad a day. I actually appreciated the fact that the rest of the family was off at work and school and I had time to myself. I slept most of the morning but was feeling fine afterwards.

Mush for breakfast and some more mush for lunch and then some work. I was very, very pleased that I was able to do some programming. I actually did about two and a half hours of programming for a client developing a full user management system for their Extranet and it worked. I was most pleased that I was able to keep up my concentration that long and the simple fact that... I still got it... I can still program... that and the other simple fact that I know I just earned at least a bit of money rather than the entire day being a loss.

By the time I was finished Desney and the girls were home and preparing for the evening. When I finished I went upstairs and passed out on the couch until dinner.

Nothing on tele in the evening, as usual, and so a boring/relaxing evening of doing Sudokus on the couch...

One major improvement was that I had reduced my pain killers from 3 to 2 (morning and evening) for the day without any great difficulties.

Arc Sunday

Today is the biggest day of the year in French thoroughbred horse racing and one of the biggest days in thoroughbred racing throughout the world.

The Prix de l'Arc de Triomphe is just plain one of the most amazing days in racing. Six Group 1 races in one day is really quite spectacular. This was the first time in 10 years that I wasn't there at Longchamp enjoying the great company of passionate horse people and screaming so much that I come home without any voice.

Sitting at home watching the races on TV was more than slightly depresisng as it reminded me just how sick I am as it would take quite a lot to keep me away from the track. It was also an interesting experience playing with the living room TV, which is also connected to the computer, and flipping back and forth between the race coverage on Equidia and betting on the Internet through BetFair. We'd watch the horse presentation and the interviews and then place my bets at the last minute. It was actually quite fun.

Throughout the first few races I kept losing, especially as I tended to (stupidly) bet on favourites, and I was thinking it was going to be a particularly bad day. But then came the 5th race (Prix Marcel Boussac - Criterium des Pouliches) which was the first race I was waiting for. The favourite was a horse bred by our team called Rumplestiltskin who is also the granddaughter of one of our all-time favourite mares (Miesque). She won of course and it was a great boost to my morale.

When I refer to our team I mean the amazing group of people I've been working with over the past 15 years or so who make horse racing such an enjoyable experience for me. If I had been keeping up a blog last year there would have been lots of bright red, blinking and annoyingly loud text when "we" won the Arc de Triomphe last year. The finest racing day of my life and certainly a day Jessica will never forget either!

Two races later was the race of the day if not the year. The Prix de l'Arc de Triomphe and there was Bago, last year's winner, defending his title and going for that incredibly rare possibility of a doublon hoping to win the Arc twice. The first race of the day was a 4,000 metre race and this one was only 2,400 metres. But somehhow it seems to last longer than any other race. The last 300 metres was just plain wonderful. If only I could scream... Bago didn't win but he did pull up through the crowd to place in 3rd which not only brought me a great deal of pleasure but also helped to recuperate my losses from the first few races. I really, really wish I was there. I can just imagine people's faces, expressions and reactions. Our team would be there maintaining their constant stiff upper lip and acting like it was no big deal but with those childish glints in their eyes. The reactions obviously would be much, much more subdued in comparison to last year but I have a feeling everyone would have been at the very least happy. It was fun watching it on TV but certainly just not the same.

I basically passed out on the couch after the Arc and the family woke me up for dinner.

The pain killers tend to knock me out at least once if not twice a day which I consider a blessing. Although they seem to work fine for my internal wounds they don't seem to be helping at all for my external wounds (the scars) which are hurting the most at the moment. Every now and then I'll move my head to one side or the other or upwards and they'll pull me back and make me say "Ow". I also seem to be getting a cold which means sneezing and coughing both of which are absolutely incredibly painful. Sneezing almost makes me cry...

Finished the evening with my classic Sunday evening of two episodes of E.R. which again reminds me that there's people out there a hell of a lot worse off than myself.

Afterwards was an episode of Law & Order with, of course, some guy dying from cancer who saves his family. It's amazing how often cancer victims are used on television as a guaranteed tear jerker. I've been watching quite a lot of television lately and it's just amazing how preponderant cancer is throughout... especially American television...

I just can't get away from it.

A slightly different Friday night

I spent most of the day either asleep or doing accounting...

I eagerly awaited our classic Friday evening of sitting together and watching a movie with takeout of some sort. Desney picked up Chinese and put all of mine through the mixer. Spicy shrimp and rice through the mixer - Duck, veg and rice through the mixer. I was able to eat everything but it just didn't feel the same.

We sat around watching yet another classic from the 80s (Ferris Bueller's Day Off) which Jessica couldn't sit through as usual. She just can't figure out what anyone would have liked in these movies. I find it quite interesting to watch her reactions having always loved old movies myself. Alexandra actually quite liked this one.

Anything that makes me laugh is good for me!

I was a bad boy

I had what should be my last appointment with my surgeon (Dr. Hagege) for a while. One of the first things I told him was how happy I was to be eating normally again. He immediately reprimanded me. I shouldn’t be eating solids yet as the stitches inside my throat are not finished healing and could re-open. Apparently the next 4 or 5 days are critical as regards those stitches and if I eat solids and they re-open I have to go back in to surgery to have them restitched. All of us would obviously like to avoid that. In addition he’s going away for the weekend so he doesn’t want me taking any risks. This brought on a nice wave of depression as I realised I was going to be going through another 4 or 5 days of eating like a baby when I had just gotten used to the simple pleasures of eating “normal” food. I have to eat mush until Tuesday.

He talked to me about my scar and told me how I now have to massage it twice a day to break up the scar tissue underneath. He obviously couldn’t know how much I hate oils and creams and such. I’ll start massaging them this evening with almond oil. It doesn’t tickle but it’s not screamingly painful either.

We them spoke about preparations for the x-ray therapy. I have to have a full panoramic dental x-ray done to ensure that my teeth and my jaw are healthy as the x-rays are shot at a range from above the jaw line to below the thorax. My teeth and jaw will therefore be weakened and we can not risk infection. An x-ray is no big deal so this didn’t bother me.

However I also have to go through another scan with injection. Immediate memories of lying there shivering with fear during the last scan cam flashing back to me. This time they’ll be scanning lower, from the thorax to the lower intestine, to ensure that the cancer has not spread to any other areas before starting the x-ray therapy. Hopefully I’ll be able to do this at the same place, and around the same time, as my meeting with the oncologist (Clinique Hartmann).

I told him about my problems with my puffed up left ear and left jaw. He explained that this was perfectly normal and that the double-surgery has created double-trauma throughout the left part of my body which will take months to recuperate.

When I left he said we would see each other after the x-ray therapy treatment unless there were problems during the treatment.

I walked back up the street to place de Champerret feeling pretty depressed about the near future…

I went to Monoprix and bought myself all the sort of mush I can eat over the next few days (yogurts, apple/pear purées, patés, soups, …). I came home and Desney ran my dinner (fried chicken and corn on the cob) through the mixer. It certainly ain’t the same.

Food glorious food

Desney prepared my dinner as usual. She put the meat through the blender along with some potato purée and a bit of onions and such. The taste is the same but the texture rather like baby food. I am starting to understand how boxers and guys who get their jaws broken must feel. I can't possibly imagine going through all of this on purpose.

However my swallowing has been getting much better lately and so I got a bit adventurous. I tried eating salad and was able to slice everything small enough with my knife and fork to eat all of my salad without any difficulty... even cucumber. It was a wonderful feeling.

I then went for a hard-boiled egg. A bit of mayonaise and a lot of chewing and another step towards solids was made. I even took a bit of meat and tried but it's obviously I still can't quite get a thick piece of steak down as by the time I finish chewing one morsel everyone else is already having dessert.

I was able to eat just about everything and felt just wonderful. A fully satisfying meal with both flavour and textures. Yet another of the great simple pleasures of life.

Scarface v2.0

As you can see I have a new and improved version of the scar. It's now a big letter Y which runs up around my neck behind my ear and down across my shoulder. I'm sure it'll impress kids in the streets. At the moment I'm sure it scares people off more than anything.

Desney and Jessica are pretty blasé about it. But Alexandra really doesn't like it and wishes I would cover it up or that she didn't have to look at me.

Taking off the bandages in the morning was not a big deal. But throughout the day as the wound was exposed to the air it tightened and pulled something chronic. It feels as though there's this sort of hole in the middle, where the wounds meet, which is pulling my skin towards it (down from the face, up from the chest, left from the shoulder and right from the neck). I now realise that it wasn't the bandages which were constricting my movement but rather the wounds themselves.

This evening was a wonderful experience. My first shower since the operation. It felt absolutely wonderful to get clean again... especially my hair. I obviously didn't scrub the scar but rather gently washed it with some Cytéal. It was great to actually wash my face though.

Afterwards was a slightly scary experience: shaving. As I hadn't shaved for so long it would have been difficult under any circumstances as the whiskers kept getting stuck in between the razors. In the end I managed to shave properly and simply left a small hairy patch where I didn't want to actually shave the wound. It looks quite strange actually but it's much less itchy.

All of this is probably much more information than anyone else was interested in...

Stop hiding...

After breakfast, and after everyone had left the house, I took the bandages off this morning. It was a relatively painless process and more emotionally impressive than anything else.

I have a very tough looking sloppy letter Y on my neck running from behind my ear down towards the middle of the neck and from the middle of the scar down towards my left shoulder. I obviously hope this will get smaller and paler with time as the moment it's pretty scary looking.

Being able to finally see the wounds helps me better understand how I feel as well. I now know why I can't turn my head in particular directions. I thought it was from the bandages but it's actually from the wounds themselves. It'll be a while before I can stretch a bit...

I have to leave the wounds out in the open, to the air as it where, for the day before I can get them wet. I can't wait for tonight when I can shower and shave (very, very, very carefully).

The results are in...

Went back to the surgeon today.

He took my stitches out which was another less than enjoyable procedure. He put another bandage back on over the wound which I have to wear until Monday. Finally on Monday morning I can take the bandages off, leave the wound open to the air all day and finally have a proper wash on Monday night. I can't wait!

After working on the wound and the stitches we sat down to speak. He had received the results of the biopsy on what they had removed from within me. It was the, now classic, case of good news - bad news - good news, whatever.

The most important aspect is that they are 99% sure that they found and removed the primary tumour. This would be the rather large (3 cm x 2 cm) tumour in my left tonsil. The entire tonsil was destroyed by the tumour. However it looks as though the bit they removed had healthy tissue around it which shows that they removed the entire cancerous area.

He gave me the results so I asked him questions about what I read, from what I could understand, and learned a bit more about just how deeply they had probed in to me. The deepest tumour they had removed was one, about 2 cm in size, that they had extracted from behind my jugular. In the area that they re-opened and explored wider they removed an additional ELEVEN tumours ranging in size from 0.5 to 1.5 cm. Two of those were cancerous. They also worked their way around the back of my neck and removed another FIVE tumours, ranging in size from 0.2 to 2 cm, two of which were cancerous. It was obviously a good thing that they were so thorough.

The basic summary is that they removed over 17 tumours and that 5 of them were cancerous.

The good news again is that he believes they have removed all of the tumours which will need to be removed via surgery. I just have to get healthy again and prepare myself for x-ray therapy (radiation therapy).

He gave me the introduction letter to start my consultation and preparation at the Clinique Hartmann in Neuilly-sur-Seine which is close to his office and relatively easy for me to get to. I will be calling them on Monday. He said that it would be a good 2 weeks before I started radiation therapy as the wound has to be completely healed before they start blasting x-rays through it.

He still does not fully understand where the cancer came from. I haven't smoked for over 15 years. I have one night of smoking per year (Super Bowl Sunday) and maybe a cigarette or two in the year when I drink a bit. I am not a heavy drinker. Although by American standards I am probably a wine drunkard by French standards I am quite a weak drinker. Being male and over 40 apparently are risk aspects but nothing much I can do about that. I'll never know if my dad would have gotten cancer as he died when both of us were so young. A lot of his family died of cancer. But then again they were all, and without exception, very heavy smokers as well.

I asked about the risk for my kids and he said it was absolutely minimal. I then asked if we were hopeful to truly remove the cancer to a stage where it would not come back. He said we wouldn't be bothering to put you, and us, through all of these invasive procedures if that wasn't precisely our goal. A bit obvious but good to hear all the same.

Mornings are still hell...

I still hate mornings... always did and always will...

Some mornings are better than others nowadays. It depends on how I sleep. If I stay on my back my throat dries out less and I can get it relubricated quickly enough to be functional within an hour or so. But if I lie on my side when I sleep then mornings can be very long.

I get up around 06:00, as the pain starts to kick in, and I take that first swallow which I dream of avoiding. Desney came up with the wonderful idea of keeping thermoses of ice water for me throughout the day. I knock back ice water all day and it soothes the throat a bit. So I came up with the idea of keeping a tiny thermos of ice water next to the bed and I am amble to start on that first thing in the morning. I basically sit up in bed sucking back ice water, very slowly, for about a half an hour contemplating why I have to go through this.

I then eat what I can which generally consists of yogurt, apple purée and petits suisses. Finally I start the morning medication of anti-inflammatories, antibiotics and the painkillers. Depending on how the morning has gone up to then I generally pass out for anywhere from 30 to 90 minutes. But if I sleep too long then I go through the same painful rehydrating process all over again.

God how I hate mornings...

Money, money, money...

I was able to do a bit of work today on the computer...

I spent most of my time going through e-mails and the work that my assistant in London is doing.

However I was also able to prepare invoices for the work I had done before I got sick and send those off. They are probably going to be some of the last invoices going out for a while.

If I was an employee this would actually be a relatively easy situation. I would just sit at home, be sick, get better, go through the treatment, have positive thoughts and get on with the rest of my life. As an employee here in France I would be completely covered financially and my salary would continue to just magically arrive in my bank account at the end of each month.

As I am not an employee when I do not work I do not get paid. I can't exactly bill clients for time I spend lying on the couch trying to swallow. September, with all of the hospitalisation and treatment, is basically a write-off. However I am hoping that I will be able to work a few hours a day throughout the radiation treatment so as to be able to bill something throughout. The house and car payments still have to be made and the social charges, from which I am certainly benefeting right now, have to be maintained. I'll know more about what my possibilities are once I meet an oncologist prior to starting the radiation therapy. Desney and I have already talked a bit about what our possibilities are or more appropriately are not. However until we know what my limitations are going to be it's not worth worrying over at the moment.

I admit I am worrying about one thing at a time at the moment and living hour-by-hour. It's amazing how much of my life is spent worrying about other people's problems and finding solutions. This is one of the first times in my life that I'm worrying about me and my problems and it takes a bit of getting used to.

My only priorities at the moment: Get over the surgery - Build up my strength again - Get through the radiation therapy - Positive Thoughts Throughout

Back to the doctor...

I went back to see the surgeon today. It was actually quite good to get out of the house.

I must have done a bit much yesterday as I was definitely very tired today. The trip on the bus back and forth to the surgeon's was actually quite exhausting.

The surgeon was running quite late, as were most of the doctors in his office, and the waiting room was full of people asleep in the couches and chairs. I joined them without complaint.

When he finally saw me he removed my bandages. He likes the look of my scar. That's the sort of thing only a surgeon can say. The swelling has gone down nicely and everything looks fine to him. He changed my bandages and gave me a much bigger bandage. Just what I needed. He explained that on Friday he will remove the stitches but he will be putting another bandage on top of the wound until Monday. So I still can't take a shower or clean myself properly until Monday. That was a step backwards in my opinion.

The good news is he said I can eat just about anything as long as it's mushed up and not warmer than tepid. When I got home I mushed up a half an avocado and ate with glee. After a week of a diet of exclusively yogurt, purées of apples and/or pears and petits suisse it was wonderful to eat something else. It felt quite revitalising to finally be able to eat some vegetables.

In the evening I actually got to eat dinner with the family. Desney prepared me all sorts of tepid purées in separate bowls (potato with cheese and milk - peas and milk - and she ran a steack haché through the blender and I mixed it in with the potato purée). It was wonderful!

I am now dreaming of the day I actually need to use a fork and knife again.

It's amazing how much of our basic needs and basic pleasures we take for granted!

Mornings are getting better...

I hate mornings. I always have and probably always will. A good early morning for me is at the end of a long night when I go to sleep.

I hate getting up in general. I do so only because I have to.

However mornings since the operation have been hell. Our throats dry out when we sleep. In my case that means all of my internal stitches contract and so when I wake up and take that first swallow of the morning it's like an entire gang has decided to attack the inside of my throat with razor blades. The pain lasts throughout most of the morning and obviously doesn't make it easy for me to eat or communicate.

Today however I was able to better prepare. I had cold water ready for me next to the bed. Although nothing can prevent that first dry swallow and the ensuing pain getting ice water down my throat immediately afterwards allows me to at least start functioning. I was able to crawl out of bed and slowly get a yogurt down me before taking the rest of my medicine. This also greatly reduced the nausea I go through most mornings.

The morning was tough and the morning was long... as always. But it was definitely bearable. I was able to get down yogurt, apple purée and a couple of petits suisses.

Mornings are getting better. Today was first morning since the operation I did not cry.

Home Sweet Home

This will be a quick entry and I will try and fill in more later.

I got home from the hospital yesterday. A lot of surgery on Thursday and a lot of resting and medication since.

I still can't eat solids so I am very weak and have my ups and downs both physically and emotionally. Thank God for pain killers as they are probably what is keeping me going at the moment.

It's amazing how we take all of the most simplest things in life for granted. Do you have any idea how many times a day you swallow? I certainly never thought about it before. But with the combination of the swelling from the tumour surgery constricting my throat and the fact that they took my tonsils out as well every single swallow is a rather masochistic experience I would gladly live without. Biology was never one of my big subjects so I'm definitely off on the figures. But we must swallow thousands if not tens of thousands of times a day!

I'm eating yoghurt, petits suisses, apple and pear purées, more yoghurt and ice cream. After almost a week of this diet I've lost 2 and a half kilos! If it was fat I was losing, rather than muscle and energy, I would probably be pleased.

Nowadays I dream of being able to swallow without thinking about it like everyone else on the planet.

I go see the doctor to get my bandages changed tomorrow and then on Friday he will hopefully remove the stitches. If I'm lucky he'll also have the results of the biopsy they performed on the tumours they removed on Thursday to know what happens next.

This morning was very rough and painful, as has been most mornings, but this afternoon I seem to have enough energy to sit in front of my computer for an hour already.

A big THANK YOU to everyone for their kind wishes, e-mails, gifts and flowers. It's a very good feeling to know there are so many people out there thinking positively. I think it's the best possible weapon.

My family is taking amazing care of me and keeping me going.

More news later...

The day the drains came out

This is pretty disgusting to explain... but... Coming out of the wounds are two drain tubes. Each tube goes in to a sort of litre-sized plastic jar. I therefore have both the perf and these two jars attached to me wherever I go. When I have to go to the loo I have to carry along all 3 of these with me. It means that each toilet experience requires careful planning and preparation to leave the bed before I need to rather than when I need to which would be too late.

This morning Dr. Hagege came to remove the drains. I didn't know it was going to be a rough experience. I had assumed it was like removing a perf. He was just going to pull a couple of tubes out. However it turned out to be one of the scariest experiences in my life. They push down on the drain to stop it draining which in turn creates a spurt of blood coming from the artery. He tells me to breathe in, hold it, he pulls and I breathe out. I assume the breathing out method is to avoid me screaming and upsetting the other patients. It worked for the first drain. I exhaled and I cried quietly. When he removed the second drain however it was ridiculously painful. It was like someone shot me in the artery above the shoulder. I breathed out and I didn't move... but I did scream.

As soon as the drain was out however things went down hill. I made signs to him that the room was spinning. He could also see that I had gone all white. He knocked the top of my bed down and thrust my legs up in to the air. I was now hanging half upside down while he tried to put the bandages back on. In the mean time I was now sweating buckets and starting to shiver. They took my blood pressure, which didn't look good, and my pulse.

He told the nurse to immediately inject me with atropine. She said she didn't know if she could get any as the pharmacy cabinet on this floor was locked this being Sunday. He yelled at her that this was one of the 5 elements she was supposed to have with her during a drain removal and that it is on the basic checklist. She said that it was so rare that they needed it she didn't think it was going to be necessary. Luckily Dr. Hagege spared me the rest of their argument and told her to run and find some immediately. It was probably about 2 minutes that she was gone but it felt like a few hours for me. The room was spinning by this time and I felt completely out of control. If I had been drinking I would have felt a lot better as at least I would have known why the room was spinning, known it was my own bloody fault and that throwing up would cure everything. This was not that simple.

The nurse finally got back with the atropine and I felt better almost immediately. Dr. Hagege finished up the bandages, stayed with me for a while until my blood pressure got back to normal and re-assured me that I would be released tomorrow morning. When he left with the nurse he started yelling at her in the hallway and I assume it continued much the same down the hall and in to an office somewhere. I basically passed out for the rest of the morning.

Desney and Alexandra came around in the afternoon. I kicked Alexandra out for a bit while I told Desney what happened. She still amazes me how one of her hugs can cure just about any illness I might go through and make me feel strong. Alex came back and we had a pretty good visit.

I spent the night watching the weekly 2 episodes of E.R., which is particularly strange from a hospital bed, and luckily they gave me something to help me sleep.

The morning after

I woke up and just about instantly remembered where I was. I then made one of those big mistakes in my life. I swallowed. I felt like the Jets and the Sharks had decided to have a knife fight inside my throat and they just kept missing each other. If I had a voice I probably would have screamed. Then I remembered that pump that I had been avoiding and I actually pushed the button. I heard a beep and I lied back down to let it do its work.

About a half hour later they came in with breakfast. I should have expected it. Yogurt, apple purée, chocolate milk and ice cream. Ice cream for breakfast? I know this would be just about any child's dream, including mine, but it just wasn't appetizing at the moment. I managed to get through one of the yogurts, the cold milk and one of the ice creams. After eating as much as I could I just sat there hoping that some day this would get better and I'd be able to eat more and properly.

I spent most of the morning doing Sudoku puzzles. Lunch was exactly the same meal as breakfast and I ate just as little.

In the afternoon Desney and the girls came to see me. I had tubes coming out of everywhere so I must not have looked great. But they were all positive and full of good thoughts.

Dinner was again exactly the same meal as breakfast and although I ate a bit more I certainly wasn't enthusiastic.

A day to get through...

La Totale

They woke me up quite early in the morning, about 06:30, to have me take my quick disinfectant shower, jump on the gurney and right up to the operation. Dr. Hagege greeted me and Dr. Hagant knocked me out.

I woke up after the operation not knowing what had hit me or how long I was out for. I couldn’t speak properly but I was immediately told that was normal. I was sweating, shivering and more than slightly nauseous. I seemed to spend a very long time in the post-op awakening room with the nurses looking over at me quite regularly. Finally I seemed to calm down and they wheeled me back to my room.

I slept for a few hours and they explained to me how to use the morphine pump. As I couldn’t speak well I couldn’t explain that I hated morphine. I still have really bad memories of the experience I had with morphine during my haemorrhoidectomy in 2001. I wasn’t willing to spend half my time throwing up to reduce the other pains. I hate throwing up. This morphine pump had a little button that I was supposed to push when I felt in pain and it would shoot morphine in to my perf and make me feel better. It remained unused…

In the evening Dr. Hagege came to see me and explained a bit about what they had done to me. Wednesday’s scanner had shown more tumours, especially one in my left tonsil, and they therefore went for “La Totale”. The endoscopy was the minimum I they were going to have to do. A tonsillectomy was a likely option and they removed both of my tonsils. Re-opening my wound and removing more tumours higher and lower in the neck was a less-likely and much more invasive option. Dr. Hagege explained that they performed an endoscopy, the tonsillectomy and the “curage ganglionnaire”. They had me open for a good 6 hours and got out all of the tumours that could be removed surgically. Because of the amount of surgery they had to perform I would be in the hospital until Monday morning. He then left me to sleep with these new thoughts…

Scanner

I walked to the métro stop and took the train to Liège where I walked to the clinic. I got there at about 09:25 where I then waited in a queue for about 15 minutes. Luckily I had arrived early as it took a good 15 minutes to do all of the paperwork and get me admitted. They explained to me that I would have a double room until this afternoon when I would be transferred to my single room.

A nice nurse brought me and all of my paperwork up to my room where she told me to wait while they checked with the scanner. She came back later to tell me that they had no appointment for me with the scanner. This even though I had verified the appointment the day before when I had done the pre-admission paperwork. She said for me to wait and they would make another appointment for me if possible. I explained that if I didn’t have the scan today the entire operation would be postponed for a week. She said she would see what she could do.

Luckily I was alone. Whoever was supposed to be in the other bed was already in the operating room being operated on. I just kicked back and waited. A couple of hours later they came to get me and told me to go right downstairs for an immediate scan. I took my enormous needle package out of my luggage and went downstairs.

It was nice to not have to sit in the waiting room down there. I went in almost immediately. The scanner looks just like it does on television and in the movies. I particularly remember Mark Greene having to go through this pretty often on E.R.. There’s that plank that magically moves in an out of this huge round tubular machine that looks like it swallows you whole. That is most likely the limit of my explanation as I spent the entire rest of the experience with my eyes closed. I laid back and he injected me with the needle. I learned that the needle goes in to a separate machine which they control remotely and which injects the substance in to me throughout the scan when they want to. Quite impressive bit of machinery they have here. I was told it would take about 10 minutes and all I had to do was not move throughout and there would be a few times when they would tell me not to swallow. That wasn’t difficult as I wasn’t exactly gulping non-stop at that moment. I was having enough trouble breathing regularly let alone swallowing. When it was finished I was starting to tremble a bit which the assistant had seen often before and so it had much more of an impact on me than on him.

After the scan they told me to go back up to my room and they would send up the results. I certainly didn’t need to be told twice to go lie down somewhere. When I got back upstairs they had already transferred me in to my new private room. This was actually a bit of a step sideways rather than a major step up. In my shared room the bed had an automatic riser which allowed me to raise and lower the back of the bed with a sort of wired remote control. On this bed I couldn’t change it without a nurse. In my shared room the shower was in the room. In my new private room the shower was down the hall. I knew perfectly well what it was going to be like after the operation and that I was going to be escorting one of the perf machines around and probably not getting a lot of showers. I don’t know if it was the effect of the medication or the scanner substance or the simple emotional drain of it all but I basically passed out for the rest of the afternoon.

I had a reasonable meal in the evening. As reasonable as a hospital meal gets. They gave me a pill to help me sleep and I was out for the count.

Mysterious flowers

I got home today to find a lovely bouquet of flowers waiting for me.

Just before my last operation I received an enormous and beautiful bouquet of flowers from my favourite Greek lady in the world. The kitchen smelled like Shangri-la for days and it was still there waiting for me when I got back from the clinic.

This afternoon's flowers are beautiful and smell wonderful as well. A pungent tulip smell to them.

However they came from an Asnières florist (A Coeur de Fleurs) with the note Aces tous nos voeux de rétablissement... but no signature! I don't know who they came from. As the notes in French it narrows it down a bit. But I am still confused...

If the anonymous sender of these flowers is reading this blog please click on the Comments link and let us know.

This is my kinda mystery!

Paperwork, paperwork and more paperwork

Final preparations for the big day(s)...

I drove to my "old" clinic (Clinique Geoffroy Saint-Hilaire) and picked up my file from the anesthesiologist's office. It was actually very, very nice to get out of the house and be doing something physically...

It took quite some time to park but not too bad...

I then drove from there to my "new" clinic (Clinic Turin) which is right next to Saint-Lazare. After going round and round for literally over 30 minutes trying to park I finally drove to the FNAC at Saint-Lazare and pulled in to their parking lot.

I had some lunch and went to the FNAC. Alexandra is going to have to be more and more autonomous this year, as I am not going to be able to accompany her as much as before, and she hopes to have lots of extra-curricular activities (Wednesday English claseses as always but also dance classes and others). I therefore got her her first mobile phone (Nokia 3100) with a prepaid card. I'm sure she's going to be very pleased.

I left the parking lot to go to the clinic and turned round and round again for 45 minutes!!! Thank God for in-car stereo and air-conditioning!

I then went to the clinic to open my file for admissions. Luckily I had all of the necessary papers with me and I was able to get registered. I am still on the waiting list, and hopeful, for a private room.

Confirmation

I got word from my doctor (Dr. Hagege) and the clinic (Clinique Turin) that my surgery has been confirmed for Thursday.

I'm actually quite pleased as I would probably go crazy if I had to wait a week between the scanner and the surgery.

As it is the worry is probably worse than the physical aspects these days. I don't really feel sick. I have a normal amount of energy and I am not in pain. I've got this thing on my neck that pulls at me every now and then. That's just the scar and the swelling underneath. Every now and then I get a sort of twinge in my neck. I believe that is actually my brain producing that purely out of worry. I sometimes have difficulty swallowing. But that too doesn't appear to be entirely physical. I don't know how I feel anymore. I don't know what's psychological and what's physical anymore. I guess everything is a mixture of both, always was and always will be. They're obviously both pretty important and one should not be considered more important than the other.

I really just want to get all of this over with and get to the other side. The other side could be pretty negative, which I don't like to think about too much, or it could be downright positive whereby this all becomes just a bad souvenir. But I'd love to have a time machine which would allow me to just jump a few months, or however long it's going to be, ahead and be through with it all. I just want them to do whatever it is they need to do to me to get rid of this and get on with the next phase of my existence.

The only bad news I got today was that, for the moment, I am in a double-room again. I am on a waiting list for a single room. But I told them that I certainly did not want to delay my surgery just for a single room and I'd accept a double in this case. Everyone is working very quickly, which I assume is for some very good reason I don't want to know about, and I certainly am not going to be the one to slow them down in any way.

I just went and picked up the injection from the pharmacy for the scanner. It's enormous!!! So now I have something else to nightmare over for the next couple of nights...

Another anniversary

I just published my previous message and the date popped up.

Just 4 years ago, on September 11th, 2001, I lived through what I called, for the longest time, the worst 36 hours of my life. My mother's time was a hell of a lot worse than mine. But it was hell none the less. Thank God (or whoever) for the Internet as that was the only communication which worked throughout.

I also thank the computer gods today for the Internet as it has made my lifestyle possible. This type of instant global communication with friends, family and contacts is just simply priceless.

As I am almost certain I am going to be losing my voice for a while some time soon this instantaneous written communication is going to make my life so much easier during a very difficult time.

September 11th 2001... I haven't forgotten.

News spreads fast

Now that I have a better idea of what I'm dealing with and am actually able to say the words we have started telling friends and business contacts what is happening.

I have had to start re-organising my life and putting everything in to priority order. It's amazing how much of my life that I worry so much about just really isn't that important in the scheme of things.

I have started receiving replies from people who've heard the news. Absolutely every one of them has been positive, supportive and full of hope. I've seen so many stories like this on the news with sad victims receiving messages and such. I have to admit I've never quite seen the interest. Why bother? It ain't the messages which are going to solve the health problem. Now that it's me I feel really quite strange. The positive messages and just the thought that there are a group of people out there, around the world, that are thinking positive for me and are all hopeful is actually quite a strengthening feeling. It's very unexpected... But I have to admit it feels good.

Yet another doctor

I went and saw Dr. Hagege today. He's an ENT (Eyes - Nose and Throat) specialist.

He put my nose and my throat to sleep with some sort of spritz stuff. He then put a camera up my nostrils and down my throat and looked around.

He found a tumour on my left tonsil. He didn't find much else. The good news is that he didn't find anything spreading down to my lungs or moving upwards.

The bad news is the rest...

On Wednesday morning (14/09) I go to the Clinique Turin for a complete scan of my throat area. They inject with some special ink and then put me in this big moving tunnel and scan the entire area. This is going to allow them find all of the cancer cells and is the most important exam in that it is going to let us know where we stand, or don't, for the future by showing how widespread the cancer is.

On Thursday morning they will knock me out and perform a complete internal endoscopy. Based on the results of that and the scanner, and while I'm still out they may very well perform a tonsillectomy which is not a big deal. If however the results of the scanner and endoscopy are not good then, again while I'm still out, they will re-open my wound of last week's operation and scrape out whatever they have found. They would, in that case, open a bit higher and lower than actually.

Depending on what type of procedure they end up having to do I will be in hospital for 2 days (endoscopy), 3 days (tonsillectomy) or 5 days (re-opening surgical wound).

More disturbing, if that's possible, was the news that it is extremely likely that I will have to go through x-ray therapy. The doctor considered this good news in that I will most likely not have to go through chemotherapy but rather only x-ray therapy.

I will have external x-ray therapy. Using the scanner results as a sort of shooting target diagram they point an x-ray pistol at my neck and shoot high doses of x-rays in the cancerous areas to kill all of the cancer cells. Unfortunately I will have to go through this every day (Monday through Friday) for EIGHT WEEKS. I am not looking forward to any of this. Apparently it's going to be very difficult for me to work during this period. However that's for an employee who works normal hours. I am going to truly try and work 2 to 3 hours in the evenings when I have energy. I have a lot of projects on at the moment, many of which I am already behind on, and I am not going to allow this to slow me down that much. I also am going to need to be able to do some billable work during this time. Although the advantage of not being an employee is that I can work when I can and when I want one of the disadvantages is I have not such thing as paid sick leave. If I don't work I don't get paid. It's very simple. I therefore have to do some work during this time to keep alive both mentally and financially...

As you can imagine I am going through all of the standard emotions (depressed, sad, angry, scared, sad, scared, sad and did I mention scared?).

Now that I have actual results and know what I have (throat cancer) I am going to be spending the rest of the afternoon writing to everyone to let them know and to get my life in order (resigning as President of the Parents' Association at Jess' school, warning my clients of my lack of availability and probably lack of voice and all of the medical paperwork). I'm not even thinking of the 2-month x-ray therapy treatment yet as I don't know when that is going to start and can't organise around it yet...

After my examination with the doctor I went to W.H. Smith's to buy some books as I don't know how long I'll be in the hospital for.

I'm just living day-by-day now and preparing myself for Wednesday...

Bad News

Dr. Girard called me this afternoon with the results of the biopsy they did on the tumour they removed from my neck.

It was not what I wanted to hear. The tumour was cancerous. The tumour was actually a secondary tumour in that it is the product of another tumour and not the primary tumour itself. This means there is another tumour in my neck area. This means that they are going to have to find it as quickly as possible and they are going to have to remove it (surgically) as quickly as possible.

But even worse news was that I am either going to have to go through x-ray therapy or chemotherapy to completely kill of all of the cancer cells in the region so that they do not come back and produce other tumours in the future.

I have to go see an ENT (ORL in French) specialist tomorrow morning for a full internal exam of the area and to schedule the rest.

I spent most of the rest of the afternoon crying...

I called Desney and told her immediately after Dr. Girard told me.

When Desney got home and the girls got home from school I told the family and explained what is going on. Jessica was very upset and ran away to her room. Alexandra I don't believe has fully understood the gravity of the situation which is perhaps not such a bad thing.

I went up and had a long talk with Jessica one-on-one. I shared my thoughts with her. How sad I am. How angry I am. How sorry I am. The stereotypical question of "Why me???". She replied with the stereotypically egotistical teenager's response of "Why you? ... Why ME???"

We finally settled down and watched a movie (Die Hard 3) and ordered from pizza hut...

I spent most of the evening crying...

Scarface

I took off my bandages this morning and had my first real shower since the operation. It feels wonderful to feel clean again. Unfortunately that's about the only good feeling I can mention at the moment. I have to admit to being a bit depressed...

The scar is actually much, much worse than how it looks in this photo. The swelling of my face is also not quite so apparent in this photo. Basically it's one big bruise inside. As I touch it around the scar it's like a big internal black and blue mark. It feels much better with the bandage off and I have a bit more freedom of movement. I had thought that it was the bandage that was constraining my movement. To a certain extent that was so. But to a certain extent it's the wound itself which can't be stretched too much in either direction.

I obviously hope the swelling will go down and the scar will fade a bit with time...

I hate time.

;-(

Jessica's 15th

When Alex got home from school she finished her work on her present for Jessica. She picked some flowers from Desney's garden and wrapped the stem of each flower, individually (!), with aluminium foil and put them in the basket she had made.

When Desney got home we dragged the new mattress we had been hiding in the cellar up to the living room. We had to go a bit slowly so I didn't stretch anything I shouldn't in my neck...

Jessica finally got home and had brought her friend Mercedes with her. We gave her her presents and she was quite pleased... not overly enthusiastic or thankful... but pleased.

We all went out to our local Japanese restaurant as that's what Jessica wanted for her birthday and had been talking about for at least a month. I obviously felt a bit uncomfortable going out to a restaurant in my present condition (unshaved hair not washed since Thursday, large bandage and a head I can't turn more than 45 degrees). But it went well... We had a good meal and Jessica truly enjoyed it. Of course she wasn't paying so it was easy to enjoy!

All in all it went well... and in another few months Alex turns 11!

Better out than in!

That's what Shrek always says!

On Friday I arrived at the clinic at 07:45 (15 minutes early) and waited around until the admissions office opened. I was first in the queue. I was admitted. But they didn't have any private rooms left. There was therefore somebody already in MY room when I arrived.

They made me take a shower in betadine, even though I had showered before I left, and I got to wear that ridiculous hospital outfit they always force us to wear. I found out just before going up to surgery that I had apparently put it on backwards and had to switch it around. However it certainly made no difference as regards covering any particular part of my body. I took of my earrind and my engagement ring, they let me keep on my wedding ring as I couldn't get it off, and up I went to surgery.

The anesthesiologist was really very kind and he spoke of the hills of the Languedoc-Roussillon as he pricked me with the needle. That's the last bit I remember...

Woke up in the waking up room with a lovely nurse making sure I was OK. I was really quite pleased to see her and almost as pleased to hear my own voice coming out of my throat. I don't remember any of our conversation. I just remember I really enjoyed having a conversation at all!

They brought me down to MY room and the other bed was empty. I thanked my lucky stars. However within a half and hour they brought somebody else in. He had an eye operation and had bandages over both eyes. He was enormous which is always nice as it makes me feel thin.

He was a definite pain for the nurses, and therefore me, throughout the night:

• He undid his bandages by accident at one point


• He kicked through, and broke, the bottom of the bed which was apparently too short


• He knocked over a bottle of water

I slept throughout most of the day and therefore had a bit of difficulty sleeping at night. My neighbour's antics didn't help much. In addition, as always, the (male) nurse would wake me up every hour or two to take my blood pressure and temperature. The anti-coagulant jab in the thigh at about midnight was also well-appreciated...

Saturday I awoke glad that the night was finished. It was a very, very hot evening and my neighbour did not like sleeping with the window open. But when the nurse came in she, kindly, opened the window and the door to the hallway and left them open to create a draft.

After breakfast my anesthesist came to see me and we had a chat while he prescribed pain-killers and anti-inflammatories for the rest of the week. My neighbour checked out at 10:00 and the morning monotony was broken up by the nurse cleaning up the room and making the bed. I proceeded to drench my new sheets with sweat in about half an hour which made them feel like my old sheets all over again...

I rented a television before the operation. Unfortunately the television was hanging from the ceiling about 90 degress left of my bed. After the operation I could not turn my head to the left or look up. I therefore ended up using my television more as a radio and listened to the news (mostly about the ridiculously embarassing post-hurrican disaster situation in America).

In the afternoon Desney and the girls showed up. It was wonderful to have a visit and to hear all about their first day at school. This was the first time ever that I was not at home for the rentrée and I definitely missed it. All news was good news and they stayed for quite a while before heading off to do more school shopping.

Saturday night was much easier as they basically left me alone after my evening medication. No more pressure and temperature readings. Being alone in the room meant no disturbances. As I had slept so much during the day it was not easy to sleep at night. By holding on to the equipment I am supposed to use to pull myself up out of bed I was able to turn and watch TV. This did wonders for my right bicep. But unfortunately I wasn not exactly rewarded with quality programming... I awoke a bit early waiting for breakfast and starting the countdown to checking out.

After breakfast the nurse came and changed my bandages. She says the scar/wound looks fine. However the painful bit was a bit of an allergic reaction to the bandage which I have behind the wound. I was hoping that the new bandage would be much smaller than the original one. Unfortunately it is about the same size and just as restricting.

After all of the paperwork I took a taxi home to find Desney doing chores, as always, Jessica in front of the television, as always, and Alexandra at school.

I sat on MY toilet and washed myself as best possible in MY bathroom. It was a great feeling.

I didn't do much during the day and I didn't turn on my computer at all. To take my mind off of everything I watched a bit of television so Alex and I watched three episodes of M*A*S*H* (2nd season on DVD). We had dinner out on the terrasse, which was wonderful, and Desney was made some easy to chew fish and rice. I watched as the rest of the family drank a wonderful bottle of Chablis Premier Cru (Moreau-Naudet) and I drank my water and took my pills. To end the evening, and remind myself what I left behind, we watched the new (for us) episodes of E.R..

Now it's time to just get through the next couple of days until I can finally take the bandages off on Wednesday morning...

Oh... it's also Jessica's 15th birthday today!